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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

2023 sponsorship support was made possible from: CVS Specialty, Enzyvant, Johnson & Johnson, Liquidia Technologies, Inc., Gossamer Bio and Merck & Co, Inc.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2023. All Rights Reserved.

May 20, 2024

Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fundraising efforts: www.withlovefromowen.com 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com